Bright Lights, Big City

Migraines suck. It is a special kind of hell.

Before I was diagnosed with interstitial cystitis (IC) and fibromyalgia, I was just sick. No one could tell me what was wrong, just that I wasn’t dying. I couldn’t leave the house and hardly left the sofa. That went on for months until I just happened to come across an article on IC as well as a treatment (hydroxyzine). Finally I was free from the bounds of my living room and bathroom!

Fibro is awful enough on its own, but at least I was able to knit, watch tv, drive to appointments, and sometimes even meet a friend for a movie. When I’m flared I can be stuck on the sofa for days but I feel confident that the flare will end and I’ll get back to what I consider normal. As I’ve had fibro since I was 14, I was able to figure out how to still have a life.

With migraines, it’s just not possible. Not only do I have noise and light sensitivity, I have other, weirder symptoms. Some are easier to live with than others; smelling marshmallows or baked cookies is much nicer than feeling dizzy and nauseated. Driving means I have to turn my head from side to side, not to mention I can see the road whizzing by me, all of which makes my head spin. It’s like being rather drunk and that light feeling you get when you shake your head.

I spent three days this week trapped in my bed because I didn’t feel safe being alone in the house and walking around. Twice in the last week, I have blacked out and fallen. The first time took out my right knee when I landed on it. The second time I just got a bruise on my leg. But I’m terrified that I could hit my head and if there is no one home, I’m screwed.

Sometimes I can’t even watch tv because I have an auditory version of blurry vision; I can hear sounds but can’t translate those sounds into speech. It just sounds like garbled noise. That means I can’t have a conversation with my husband. I get nauseous and shaky. It’s hard to knit when you don’t have much fine motor control. It’s difficult to concentrate when you’re worried you’re going to heave, not to mention dealing with the blinding pain.

While fibro is debilitating, it is nothing compared to chronic migraines. I never thought I’d long for the days of “just” having fibromyalgia. If I had a doctor’s appointment, I could suck it up for an hour, knowing I could come home and go back to bed. With a migraine, things get cancelled. I don’t know 24 hours ahead how I will feel; I could feel perfectly fine ten minutes before needing to leave to go somewhere then get hit with blinding pain and nausea and not be able to leave my bed let alone my house. As much as I hate to pay $40 for a missed visit, it’s much cheaper than dealing with a car accident. I wouldn’t drive while drunk so I’m certainly not going to drive while migrainous.

I am incredibly lucky because my family is sympathetic. My husband gets (bad for him) migraines and has to just sleep through them so he knows somewhat how I feel. My daughter gets aura without migraine, so she realizes just how awful all the accompanying symptoms are. That means dinner still gets made, floors are still swept, and laundry still done even when I’m out.

About the only thing I’ve found that is a useful preventive is cranial sacral massage. While it’s not a good rescue solution, it can prevent or abort an attack. I can easily lie on a table and let someone massage my head and neck as long as I don’t have a raging migraine. Of course then I end up with crazy Einstein hair, also known as the post-fornication look. I’m sure all the shops around the massage therapy school think that people are having mad sex in the parking lot as I’m not the only one walking around with crazed hair and a satiated glazed look in my eye.

I have hope that I’ll eventually get this figured out. It took me years with fibro before I figured out how to still have a life. It’s only been seven months since the chronic migraines started; I’m still learning what the question is so I can’t be expected to know the answer yet.

Meanwhile, I have set up a nest on my bed. I have my computer, phone, knitting, and tissue all within hand’s reach. My mp3 player is loaded with cello music as I’ve also learned that low frequency music works with my rescue meds to shorten an attack.

Ugh. Even as I type this, I can feel a migraine wavering in the background. My left eye feels tender and pressurized while my left brain has a dull ache. I already know that our plans to go out for dinner are not going to happen. Like I said, migraines suck.

 

 

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3 thoughts on “Bright Lights, Big City

  1. Barbara Marincel says:

    I totally agree! When I get migraines all I can do is lie in a dark room and pray one of the neighbors doesn’t decide to mow the lawn. The worst part is the isolation, and having nothing to occupy my mind. Luckily Botox injections have saved me from daily migraines, but I still get about ten or so a month. Fibro I can deal with. Migraines are much more difficult to handle

    • mzklever says:

      It’s tough because not only do we not have anything to occupy our minds, we couldn’t make sense of it even if we did! While I was in the hospital with an attack, I was in a room directly over a construction area. Hospitals *REALLY* need migraine wards with super sound insulation and NO windows.

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